Aspergers/Autism/Sensory Integration Chatter #4

[loulabelle]

Meow, I actually think I have sensory issues too. Noise especially, when things are too loud I go into near panic, can't stand people eating near me, even if they are the most polite eaters. I can almost imagine the sound and feel slightly panicked just typing this.

Parents suck with this type of thing. My mum just thinks I'm worried about nothing. She even said to me if sam gets a diagnosis to take it with a grain of salt. I just don't think that generation understands asd and the huge spectrum. Annoying still.

[Yeddi]

Sorry for the confusion... I don't think you cure ASD either. Was trying to be sarcastic as I'm really annoyed my dad was trying to big note himself they cured my autisim with early ed. WTF? I wasn't austistic! I think I had sensory prosessing which may have been helped though. I'm annoyed he thinks my son can be "cured" if I'm as good a parent as he was. Yeah right. Whatever. Really dislike my father, sorry. I want to start the diet/heavy metal detox stuff soon. Not sure how that works when E only eats 3 foods though.

Epsom salt baths are one of the best ways to start with toxic load, not just metals, but even if they are sensitive to natural chemicals in their food, it will help draw them out through the skin. If E only eats three foods, it might be worth starting on the GAPS diet rather than an elimination diet (there's not much more you could eliminate really). We looked at elimination diets, but the way I saw it was that elimination diets remove the things that are causing issues, where the GAPS diet stops them from being issues in the first place ITMS. The GAPS diet says that autism can be "cured" but what I think it means by that is that the improvements that are seen are normally so great that the children get taken off the spectrum, they still have to deal with the issues and be careful of yeast overgrowth etc., but there are a lot less of dx criteria so they don't need the label anymore.

[meow]

Oh thank you! The GAPS diet sounds like just what I'm looking foor. Was hoping for some direction from a natrupath once settled so I hadn't researched yet. I'll look it up. I had heard clay baths were good for detoxing mercury so good to hear epsom salts are good. I'll get some and start those. E is pretty high functioning so I hope with working out these triggers and influences we can take away most of his spectrum traits. I'd most like him to enter our world and engage a little more. We get glimmers so I know it's there and he wants to. Just to help unlock him. We start speech tomorrow. Scored a male therapist which is awesome as E actually tries to engage dads in playgrounds etc and I think a male will be able to interest him more.

[*Efjay*]

Meow, I actually think I have sensory issues too. Noise especially, when things are too loud I go into near panic, can't stand people eating near me, even if they are the most polite eaters. I can almost imagine the sound and feel slightly panicked just typing this.

Parents suck with this type of thing. My mum just thinks I'm worried about nothing. She even said to me if sam gets a diagnosis to take it with a grain of salt. I just don't think that generation understands asd and the huge spectrum. Annoying still.

LOL I can't stand people eating near me. DH thinks Im weird. But it bugs the **** out of me LOL

[loulabelle]

Mine too Fiona. Maybe we are...

[Yael]

Hi guys,

Sorry I have been so absent lately..

Having a really bad few weeks.. DS behaviour is terrible, I have no idea why. Huge melt down at school pickup 2 weeks ago, had calmed him down a bit and was talking super quick to a mum about an urgent thing and he ran off across a road and infront of a car. When he is in a mood he loses all sense of everything..

And every afternoon it's like he is on red cordial, running, jumping, banging into everything. Won't go on the trampoline, so hard to do anything.

I just want to cry.. I'm so sick of it all.. I don't want a ASD kid anymore.. I feel like it's punishment because i said before i had kids I was one of those mums who really mentally would never be able to cope with a special needs kid.. and now look.

I want to give my kids away and run away for a few weeks, but it's impossible. We have very little (i.e. none) family support, only 3hrs of respite from the council a week, and it's just not enough.

I don't know what to do anymore.

[*Efjay*]

Oh Yael. Big Hugs. Its so incredibly overwhelming at times. Just know you are doing a fantastic job & your kids need you & you are doing the best you can to meet those needs. It the end of term & even the "normal" kids hit melt down stage at this time of their first year school. I know its not much but your not alone. Maybe you could try picking him up from school an hour early or something for a few days & see how that goes? Beat that melt down moment of the end of the day before he gets a chance to hit it?

I dunno, I know Evan use to go crazy at school pick ups & I just felt terrible having to go do that run each day knowing what I was in for once we got home, its an awful feeling not wanting to go pick up your son. It did pass though.

[Yeddi]

I think we've all had those moments Yael, and then I remind myself how it could be worse and look at DD's strengths rather than her weaknesses, and try to find opportunities to praise her and that makes me feel better, but sometimes it's harder than others. Perhaps his not getting enough sensory stimulation...

I've just come home from a meeting with our school were we have arranged for DD to do only 2 hours a day (10am-12pm) and we will do Waldolf homeschooling (which is heaps more sensory based) for the rest of the time. THEY were very supportive and accommodating, and even suggested only paying pro rata fees, which was great! WIN!!

[*Efjay*]

Hey, Just after some suggestions..
Lately mornings are a real issue. There is anxiety, pacing the house, hand flapping, back forth trips to the loo, belching etc etc. Its a new thing to be so anxious in the mornings.
What sort of things can I suggest to help my HUSBAND! Poor DH, I know he is under stress at the moment, But he really seems to struggle in the mornings. Once he is ready & off to work he seems fine. But the whole getting ready process is obviously distressing for him atm. He even commented this morning about how hard the mornings are. He says he is enjoying his new job, lovely people to work with, nice environment etc.
I suspect that maybe its the leaving me for the day with that any call to work could be me saying you need to come home Im in labour... I just wonder what I can do to help him. To be honest (and selfish) its doing my head in a bit. I need help in the mornings getting the kids ready but he is just pacing around the house trying to pull it together.

Kinda funny when I noticed him hand flapping this morning. He always does it, or he rubs his hands really fast together. All I could think was.. And you don't really think the boys are on the spectrum?! Look at you!

[loulabelle]

Hugs Fiona, that must be very distressing to watch. Hand flapping? Ah, kinda sounds spectrum to me as does him getting so worked up.
Do you have anyone around, parents or friends that could come to help until the baby is born? Alleviate some of that stress? I'm not much help, sorry.

Not so good here. Ds is losing his voice. Before it was the stutter but he's starting not to be able to get words out at all. He opens his mouth but no sound comes out. He's finding it really distressing so in turn I am too. Don't know how long it's going to take to get a diagnosis which means I don't know how long until we can get treatment. He's talking less in general, I think because his confidence is down. I'm trying my hardest to help him, to help put words in his mouth or distract him.

This is going to sound so naive, but I'm still learning. That sounds spectrum right? Obviously high functioning but asd kids do want to be able to express? He wants to desperately, he just can't.

[*Efjay*]

DH and I have "joked" that he is asperges. He kinda just smiles when I say it now. He is. No doubt about it. He says his child hood is similar to Evans. Which is why we are working so hard to change things, well not change Evan but change how it is for Evan. Dh never got help. He was in his 20's before he started getting help for his anxiety. But his parents fail to see the problems. Both him & his sister suffer with Anxiety. When I talk to his Mum about it though she just goes on about how she doesn't understand why they are this way. they had loving, well socialised childhoods. But Dh wont talk to his parents about how he feels his childhood was & its not the rosy picture she paints. I feel really sorry for him & what he had to deal with on his own. Its really sad that he was alone through his childhood with an obvious ASD. His mother did tell me he was tested by the "university" as a child as he was so smart. She has said they said he was a savont (sp?) But she doesn't seem to realise what that means. The man selflearnt to read before he attended school yet couldn't catch a ball, make friends etc. DH hated school & says it was the most miserable time of his life. Which is his motivation to help Evan.
I guess maybe too, all of this coming out with both out older boys, its becoming more "real" & I think he is having a hard time dealing with it. Or more dealing with the memories its probably triggering for him. Seeing himself in Evan & knowing how that felt.

I was asking Evan the other day about what he got up to during Lunch time. He said "nothing, I just wandered around the school" It really struck a cord for me. You know that song by Kate Miller Heidke "Caught in a crowd" (YouTube - Caught In The Crowd (Lyrics) Kate Miller Heidke) there is a line in it about how he use to walk the boundary of the school every lunch time. Maybe its just the hormones but holding back tears just listening to that song now. Hate to think this is what school is/will be like for Evan.
gah anyway...

Laura - Do you think maybe getting DS to draw/paint, that sort of thing might help him express himself. It must be so hard to watch him struggling like that. Glenn has trouble with his speech. But he just gets loud when people have trouble understanding him, he seems to think it because we can't hear him.
I guess also, just letting him know its ok, take your time no need to rush just think about what you would like to say & that you will take the time to listen.

[Yeddi]

Fiona, get him to write down a to do list of the things he needs to do in the morning, similar to how we use visual schedules with pictures for the kids. A to do list is fairly adult, so shouldn't be to confrontational.

Laura - Yes, not being able to express themselves when they are in a high emotional state is very ASD. Have you thought about the doing the feeling cards at all, where he can just find the appropriate one or point to it. It might be worth looking at his sensory profile too. Does he seek certain stimuli, avoid it, seem sluggish and hard to start? If you can work out this, you can work out what the possible triggers are and it gives you the tools to mitigate them to a certain extent. A useful trick to help calm him could be to squish him between two pillows, or roll him tightly up in a blanket. Deep pressure helps a lot. You'll need to do this before they really start to lose it, make a game out of it. We do it by pretending we don't see DD and sit on her, going "this is a lumpy seat" or pretending we're wrapping her up in a blanket like a present. Or even just giving long bear hugs, that can include arms and legs. DD is generally sensory seeking, so generally loves having this done. A sensory avoider however, might not be as receptive at first, although generally do warm up to it depending on how you approach it.

Now, I need a little help. Smells. DD has become very ole factory seeking the last few days. She had great fun emptying the contents of a citronella candle out over the back porch. Currently my house stinks, but at least there are no mozzies! I've given her a strawberry chapstick to keep in her pocket throughout the day, so she can take it out and smell it to get her fix. It also has the benefit of feeling smooshy on her lips (bonus) but it isn't really an interesting enough smell to keep her contained for too long before she tries to find my perfumes to either tip down the sink or put on her dolls. Any ideas of other ways she might be able to appropriately get her fix?

[christy]

Yeddi, I had DD organise my spices... put them into jars and label them with me... I found the ones she loved and we put them in old baby food jars with labels on them on her level so she could smell them when she needed her fix at home, ones like star anis and clove and cumin were her favourite for a while... I've also seen in the chemist a diy perfume kit for young girls? I also burned incense in the house and bought oil burners... I took DD to choose the oils so she could tell me which one to burn. I think sometimes the sweet smell doesn't meet that need... I would often make heaps of currys or very smelly food (fish... ) during DD1's time. I used to feed her fish cakes for lunch etc etc... always something with a strong smell. HTH!

*warning mentioning Lu....*

FJ- Lulu used to flap... we used to joke about it and she would text me when she flapped and say "why did it take me so long to see this???"

loulabelle - DD1 has gone through periods of loosing her ability to speak. It is always due to anxiety levels, and sometimes its horrible because it increases her anxiety to not be able to speak and then its meltdown city. When we were doing speach therapy it helped, but even now, after we finished speech (its 4am and I can't work out how to spell speech lmao) she goes through phases of it. Currently, she tries to spell it out in air.... I've just got an app on iTunes to help her on my iPhone. She can write the words out but not say them. She now laughs when it happens, but its soooo frustrating for both of us after a while.

[Yeddi]

Burning incense - duh. Why didn't I think of that! I wonder if frankincense would be good or bad. It's meant to have a focusing effect, hence its use in temples. Would they become more focused on the things that overload them, or would it help cut those things out. I will have to do some experimentation. At the moment I've only got lavender, and peppermint.

The spices are a wonderful idea too. Thanks Christy. I wonder if I can make her a smelly box for school...


Oh, I just wanted to share a major win! This week DD drew her first ever recognisable picture, yay! We've been working very hard on it with the OT. Before she used to just move her textas around the page doing circles upon circles until the paper disintegrated because it had so much ink on it, but after a year of therapy now we have a picture - a face. It's still circle based, head, nose, eyes and an "o" mouth, BUT it's a picture! I cried.

[Early Kids]

Sorry selfish post... How do I explain to DS1 that once the banana has been broken that it can't be fixed but it's still ok to eat?

He won't eat 'broken' food and it's one of the few things that really set him off

[Yeddi]

I've read something about this. It's about wholes and not understanding how parts make a whole, so it means he doesn't think it is a banana any more because it's not together.

Let me go find it, I wasn't reading it too long ago...

[Early Kids]

That'd be great thanks!!! That does make sense about it being wholes and not understanding parts,

It happens with all foods, just today it's a banana lol.

[christy]

We had that for years... if something broke while eating it, then the whole thing is gone. I used to get so angry and frustrated at her... then I just gave up... She has had the issue recently with bread having a hole in it...